4,260 miles later…

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Breathing has not been this easy in far too long. Making the trip to Texas was quite possibly the best decision since Poppy’s birth.

Meeting Dr. Fearon was delightful. He is kind, compassionate, animated, honest, and reminded me very slightly of Gene Wilder as Willy Wonka – in speech, not appearance.

I learned more about Apert Syndrome, I shared my questions and fears, I listened intently to all of the GOOD news he offered, and I was granted something more precious than gold – time to breathe.

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While some of his offerings were still hard to hear and added a small dusting of fear atop an already weighty blanket – I walked away feeling for the first time in her whole life, perfectly calm.

All of the things I’ve been asking about and fighting for here in Portland from her doctors (sleep study, breathing tests, etc.) were right on. Perhaps the biggest and most generous gift of all was Dr.
Fearon’s word to personally respond to, and correspond with her medical team here. This in itself is the reason I pushed and shoved my way through the negative comments and nay-sayers and made Texas my number one priority. This is why I spent countless hours sobbing on the phone to get her in to see this doctor. This is why me and my village of friends and family hauled Christmas trees to sell, baked cookies, and spread the word about Poppy.

Dr. Fearon said she will have ten beautiful fingers, no problem.

He did say that her cranial surgery was done too soon and she will need another one before her third birthday. He also said that she needs tubes in her ears because she is likely hearing as if under water due to built up fluid caused by narrowed drainage tubes.

He said that the seizure episodes may not have been seizures but could have been caused by reflux and/or the extra fluid in her ears. While certainly not conclusive, any offer of an alternative to seizures is welcome news.

So now, I breathe and enjoy my children. I come up with creative and fun ways to raise $60k.

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Most importantly, I know in my heart that I am doing everything possible to ensure Poppy has the best care and the best quality of life. I know that my decision was the right one and even though it seemed impossible – I got her there. I did that (with the help of all of you).

I have so much more to share from our trip, but I will leave you with this for now.

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6 thoughts on “4,260 miles later…

  1. This sounds like great news and a trip worth every effort you made. Keep sending updates about fundraisers and we will hope to help as much as we can. Our prayers are with you, Poppy, and your family and support team.

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  2. So glad you loved Dr. Fearon. We’re making that trip next month with my daughter/granddaughter. Glad he believes those weren’t ‘siezures’ that Poppy had and am glad you guys had so much good news! Looking forward to our appointment…

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  3. Yay! Yay! And many more yays!!! Dr Fearon IS all that you described! I’ve had the wonderful gift of his feedback via phone. Most of all, my heart overflows with joy at the news that you are breathing easier! That, dear sweet diligent mama, is such good news! No one and no amount of encouragement could give that to you so it is a BLESSING and a GIFT! And I sing praises!!! Many hugs and kisses to you and yours… And always, thanks for letting my heart into the healing that your heart’s story brings.

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  4. I’m so glad to hear it was a good visit! My Callie Anne is 7 weeks old. I’ve been fighting to get to work with Dr. Fearon, as well. We live in Arkansas and our insurance doesn’t want to budge on the coverage that would let us have her work done there, but it doesn’t matter. He is the best and we want the best. He has personally emailed me several times and talked to me on the phone twice to answers questions I’ve had after being told things by our local doctors. He’s amazing and we can’t wait to meet him when we go for our first visit on Feb. 21.

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  5. Absolutely superb. You keep listening to your heart and soul that where your guidance is at. Hmmm sounds to me like the Oregon insurance folks need to take another look at what care should be covered. No matter we all know that “NO” is not the answer or a reason to stop searching for what is best for Poppy.

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  6. I am so glad that this journey and doctor have been well worth all the struggles, trials and tribulations. This is the light at the end of the tunnel that you needed to see. It is the reassurance that the everyday trials will somehow be erased and subdued when you hear wonderful news such as this. Continue your strengthen and fight for little miss poppy. YOU are her greatest advocate. Much love and happiness.

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